Wednesday, January 16, 2019

When Your Child's Trauma Causes Parental PTSD

Trauma. What comes to mind when you hear that word? In the world of adoption, we automatically tend to think separation from birth parents, neglect, possibly abuse, and a loss of what is known and familiar.

There is more and more information and awareness being spread about this topic, but we don't hear as much about what trauma does to a family. This is probably due to the guilt factor felt by many of us who parent a child with early child hood trauma. We think, "My child has lost so much, how dare we complain about how his trauma affects us???" If you are like me, you bottle it up. You know it isn't healthy to do so, but what are the options, especially when the layers of trauma are deep and complex.

We, like many families who began fostering before there was much training on attachment and how trauma affects a child, felt that love and supplying a child's physical needs was all that was needed for said child to grow up to be an emotionally, stable individual. Thinking back on our training, I am sure we touched on this topic although it certainly wasn't front and foremost as it should have been. Instead, we learned how various drugs affect the body and how an individual who is using them, may present. We learned how to prepare our homes to pass the safety inspections, how to fill out monthly reports and that type of thing. We didn't learn what to do if a child refused to eat for days because he was mad at mom. We didn't learn how to care for a child who screamed all day, every day, nor did we learn about building an attachment with a child who had experienced the loss of all he held dear, or worse yet, never learned to attach to anyone.

With that huge gap in our training (and I am not blaming the caseworkers, they had little more training than we did) we became foster parents to children who had been exposed to drugs and alcohol, children who had been neglected, babies who had soda in their bottles rather than nourishing formula. We had children who didn't feel pain, children who didn't recognize their birth parents even though they supposedly lived with them. We had children who rocked themselves to sleep, banged their heads on the floor and ate dog food at every opportunity...and we tried parenting them in the same manner as we did our biological son. It didn't work. Time outs didn't work, ignoring the negative behavior while praising the behavior we wanted to see didn't work, we tried every type of parenting in the book, nothing worked.

Our toddlers became preschoolers and the behaviors only intensified. We added lying, stealing and manipulating to the mix and as they grew and became school age, their behaviors only became more complex. We learned about therapeutic parenting but that only brought minimal changes. We tried therapy, but had little success. 

Our children were coping in the only way they knew how,  which was by striving to be at the top of the pack by what ever means necessary. It is called survival. Someone who is struggling to survive is not worried about relationships, he isn't thinking about how his choices affect the future, he is thinking one thing only: stay alive no matter the cost to self, or anyone else. I think we have a tendency to forget that even though our child has been with us _____ years, until they heal from their past trauma's and can truly feel safe in our home, they remain in survival mode. Several of our children have been with us for nearly a decade and they still struggle in this area.

Using traditional parenting methods with children who have experienced foundational trauma, for many reasons, only intensifies the behaviors. We have a child who struggles to stay dry, consequences are not going to help her because we know it is rooted in trauma (although I have yet to figure out exactly how, although we do know traumaversaries intensify the problem). Disciplining a child for a behavior they cannot help, does not promote bonding. Another child struggled with sticky finger's, we finally realized that we had to be proactive and check pockets, shoes etc after we had been away from home because this child truly wasn't getting that taking things was wrong. He saw it and his survival brain said, "Take it." Unfortunately, it took us years of trial and error to realize that we need a different approach and the rage and irrationality that resulted from our unsuccessful methods added another layer of trauma to our family. The child who took things, just became sneakier, we became less trustful and things snowballed.

Many of our children battle mental health issue's due to their trauma. While medication's can be very useful and even absolutely necessary, they can also have undesirable side affects behavior wise that add still more trauma. These behaviors often feel as though they are directed at you, the parent, and if you respond in the wrong way it can easily cause yet another layer of trauma.

 Our children feel safest with us, even though it certainly doesn't feel that way most days. We all let our "big feelings" out with those we know will love and support us through our worst moments. This means your child may present well in public but be a handful, to put it mildly, at home. We have one child who is a master at putting on a good front. People tell me how well this child is doing and I think, "You have no idea have no idea how much effort my child is putting forth to appear put together, the meltdown's and drama are going to be tenfold in the coming days." It's enough to make me want to crawl into a hole or become a permanent hermit. The well meant comments made in my child's hearing compound her trauma as well as mine. She knows she is presenting as someone she is not, while I remember how another child's similar actions helped lead to a CPS investigation. And guess what we get? More trauma.

Eventually we as parents develop secondary PTSD because we become traumatized by our children's trauma reactions. We dread waking them in the morning because we know we will be yelled at and have abuse heaped upon our heads. If we do something nice for our child, the behaviors will intensify tenfold..so we back off, then feel guilty for steeping back from our child when their negative behavior is clearly showing they need us. But trying to build a bond means that we are subjecting ourselves to more negativity and we begin to feel resentful. Therapist's have told me time and again, "Separate the child from his actions. Love the child but not the actions." I have yet to figure out how one does that while actively building a relationship. 

Self care is a buzzword we hear about everywhere, but when you have children with severe developmental trauma/attachment disorders it is tough. I think you need to begin practicing self care when a traumatized child is placed in your home, not when the child has been with you for years and you are hanging onto your sanity by the skin of your teeth and know that any self care on your part is going to come with a price tag, behavior wise from your child, that you simply do not have the mental and emotional stamina to pay. 

You see yourself becoming a person you never intended to be. You see bitterness, pain, grief, loss, irrational responses, fear and pain. In fact, if it were possible to look into a mirror you would see you too are a victim of trauma. You are bound by the same trauma reactions that have your child reacting negatively to everything and everyone that crosses his path.

And then there are the siblings, "What doesn't break us makes us better," according to one quote, but the stakes are high when there is constant backlash from the siblings who's very existence is built on trauma. Siblings build walls and fight battles in order to protect what they love and hold dear, but trauma knows no bounds causing further erosion in already shaky relationships. Sometimes I look at my family and shake my head in wonder that we are still standing, other times I shake it in despair because the reality is, while we have made progress, we have a loooong way to go and I wonder, "Will we make it?"

Thankfully, there is more training becoming available all the time for both parents and therapists. Training that can help children heal, training that can prevent parents from using wrong methods which only cause more trauma for everyone involved. To all you parents in the trenches of parenting a child, who for whatever reason is making your life difficult, hang in there you aren't alone! Having other parents who understand that I don't hate my child when I vent my, "Big feelings," has been a life saver. Knowing if I call a friend in tears, she will assure me that I am not a failure, that the mistakes I made are redeemable and not all is lost, is such a blessing. Knowing she will sit and listen and not judge or condemn because she too has walked this path and knows it isn't as easy as giving another consequence or standing my ground, gives me the strength to get up and try again. 

" Alone we are strong, together we are stronger"

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Friday, December 21, 2018

Compassion Fatigue In Special Needs Parenting

This afternoon I came across this Ted Talk: Drowning In Empathy: The Cost Of Vicarious Trauma and a light bulb went on in my brain. See, I have really been struggling here of late. Life just isn't much fun when you haven't felt well for months, you have traumatized children with health issue's for which there don't seem to be answer's and it's December, the month in which our family has one too many trauma triggers.

In her talk, Amy Cunningham explained it this way, "Compassion fatigue is the post traumatic stress disorder related symptoms that you receive vicariously as a secondary target to trauma." Does that ring a bell with any of you who are parenting children with trauma or brain injuries due to substance abuse? It sure did with me! Much of my trauma comes from being the target when my children's trauma overwhelms them and they lash out at the safest thing in their world, mom.

Amy goes on to say that being an empath -having the ability to put yourself in someone else's shoes, and really get it- puts you at an even greater risk for compassion fatigue. Personally, empathy is one of the things that helps me look beyond my child's behavior. 

When my child self sabotage's every fun family activity, putting my self in his shoes and feeling the internal pain he has due to circumstances beyond his control, gives me the ability to view him as a hurting child who is afraid or doesn't believe he is good enough to have a good time...and I can feel empathy versus frustration.

When my child ruins a sibling's birthday gift, empathy allows me to look at why he ruined the gift versus giving consequences.

When my child screams abuse at me for no reason, empathy allows me to remember it is a traumaversary and not to internalize the words. Empathy allows me to hold my child and remember that he lost his first family and he still yearns for the approval of his birth mom. The words he is screaming come from a wound deep inside and while they are directed at me, I must not take them personally.

When my child pours on the charm for anyone outside the family but dishes out rages and put downs the remainder of the time, empathy reminds me that we are her safe place.

As the parent of a child with trauma or brain injuries, you are always on call. You can't say, "I am "compassioned out", I have nothing left to give, no rages today!" Quite honestly, on the days when you feel that way, your child is going to be extra challenging because he senses that his strong rock is wavering. His anxiety is going to skyrocket which will trigger the behavior's, which will mean you have to intervene. Again, and again, and again and as the years pass you will find yourself changing. Things that you were once able to overcome with only a small struggle, will loom larger and larger. 

As you walk through trauma with your children, you may find yourself triggered by their trauma, but as a good parent you will tell yourself that you have to remain strong for your child. If you don't who will? You will see your child going into trauma mode and your stomach will clench, you feel weak and panicked because you know what is coming and you know that even though your heart feels drained of empathy, you are going to need to fake it because without empathy on your part, things are going to go down fast and hard. 

Amy Cunningham shared how burn out and compassion fatigue were once confused. Here is her explanation of how they differ, " Burn out is being worn out and tired, and just flat out not liking your job. Compassion fatigue has to do with being afraid. Compassion fatigue begins to change your hard wiring, change who you are. We see this in Child Protection Workers. They become over vigilant, believing that everyone is out to hurt them and their family." Sound familiar? It sure does to me! The memories of a child sharing their story, a child sobbing until they are breathless because of the pain in their hearts, a child begging you to help them and knowing you are helpless...these memories don't go away. When you love a child, you hurt when they hurt, and our children hurt a lot.

We like to think we will be fine, and can take years of this trauma but as I am finding out, it catches up to us. My doctor told me recently that I got in trouble health wise because, "You were too busy being a mom for too many years." I didn't tell her, but she only knows a fraction of our story. My brain and body had been shouting for years trying to get my attention but I didn't see any alternative. If I am honest, I still don't. Amy says that what many of us do is buckle down and work a little harder. We have this mindset that if I work just a little harder, I can make this trauma go away. That isn't rational thinking, especially in the area of parenting traumatized, brain damaged children. I mean really, we know we can't make the damage go away, but sometimes in our panic we act as though we think by doing more therapy, finding another doctor, finding another RTC, putting up more alarms and camera's...then things will get better.

Another sypmtom of compassion fatigue that Amy mentions is not having enough; not enough resources, not enough thanks. "At the beginning, when you agreed to do ___________ did you know you were going to be under appreciated etc, but did you say, it's okay, I love you enough that I am willing? Then somewhere along the way it was no longer okay. It is no longer okay that I am not thanked, that I don't have what I need to succeed? What that tells me is that your circumstances didn't change, you did." WOW! 

Amy makes mention of the oxygen mask metaphor. Say you are flying with your children and the need to use the masks arises. In order for you to help your children, you need to first put on your own mask. As any parent knows, your instinct is to protect your children before yourself. I remember the other month when Kiana and I were both sick and I needed to see the doctor asap. He said I can take Kiana's appointment and bump her's back a week. I felt so guilty doing so and he reminded me of the oxygen mask metaphor. "If you don't take care of yourself, you won't be here to take care of your children." We like to think that we are super parents and can care for our children before caring for ourselves, because that is what we do, right? But we forget that without putting on our own oxygen mask's, we will be unable to help our children. 

Having said all that, I KNOW I cannot give from an empty vessel, I KNOW I cannot give what I don't have but the fact remains that if I stop, my children will crash and what is life without ones children? So, like so many of you, I find myself giving, struggling a little more each day, but still giving because what is the alternative?

 However, for me, knowing the why behind my struggles gives me a little hope, just enough to get up and try again in the morning. Amy suggest's ten minute's of self care daily to help alleviate compassion fatigue, but personally, once one has gone into full blown compassion fatigue, ten minute's is woefully inadequate. Since we have begun homeschooling, the children go to their rooms to read for at least 1.5 hours every afternoon. I need that quiet time to regroup. Sometimes I feel guilty because what mom needs a break from her children, then I remind myself of the oxygen mask metaphor and use that time time to regain my equilibrium. 

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Monday, December 3, 2018

The Daily Struggle Of Parenting A Child With FASD

    Does anyone else struggle with the intensity of parenting your child with FASD? Maybe it is a personal problem of mine, because I can be floating along providing the structure and support my child needs, and then I get a glimpse into the lives of those who's children do not require mom and dad to constantly be on guard to thwart a meltdown or catastrophic event, and down I go. I can't help but wonder what life would be like if we didn't have to subconsciously be on guard all the time.

Constant Supervision:

He has to ask for permission to use the bathroom -because unless he is in his room, I need to be right by his side or he WILL get into something he shouldn't. 

Ask for permission to flush said toilet -I can quickly forget he is in the bathroom and the longer he is in there, the more things he can and will find to flush down the toilet. On the days when he is dysregulated, I need to check the toilet because who feels like digging unflushable's from a full toilet?!?

Listen to make sure his door latches as he goes back to his bedroom -because he learned if he doesn't latch his door, he can sneak out of said room without my being aware and roam the house.

Check the camera that is in his room multiple times because even though his room is, "Joseph proofed," he can still get into trouble. My biggest fear is that he will accidentally strangle himself because he loves tying things around his neck. And no, he doesn't understand why this is dangerous. He loves strings, rope's etc and even though he is banned from having them, he is sly enough to sneak them into his room without getting caught.

Constant Evaluation:

The three younger children sit around the kitchen table to do their school work. If I need to step out of the room to take a phone call or even use the bathroom, I remind them of our rule, "No talking or communicating while mom is out of the room." Without fail, Joseph will talk or make make motions with his hands to get his sisters attention. When reprimanded, he melts down in tears because, "I was sitting here quietly and you say I was talking!!!" If I tell him I could hear him, he gets a sheepish look on his face and says, "Well, I did talk a little, but it was just a little bit!" There are days when he is accountable and days when his not and I have to constantly evaluate whether or not his brain is functioning well enough to tell the truth.

I can't send him on an errand out of my sight without first thinking, "Is he able to follow directions today?" Next, "Is it safe to let him go down to the basement...what is down there that he might get into? Does he have "sticky fingers" today?" 

As with many people with FASD, he doesn't have a filter on his mouth, what he is thinking comes out, much to the dismay of his siblings (and sometimes his parents). When telling him to sit quietly, we have to take into consideration his ability to actually be quiet. There are days when his mouth runs nonstop, all day long. I often tell him he has to stop talking because my ears are hurting. In actuality it is my brain that is hurting from constantly trying to decipher what it is he is trying to tell me. It is so easy to get frustrated with the continual monologue that flows from his mouth but it is unfair to show that frustration if he really cannot help it. The hard part is figuring out what he can and cannot help.

It is only when I am not responsible for him for a few hours, that I realize the huge amount of brain power that goes into keeping him safe from himself and the world around him. Someone was recently in our home for a visit and commented in an astonished voice, "He takes an incredible amount of supervision!!!" I felt like saying, "This is a good day, you should see him on a bad day." 

Caring for him is alot like parenting a toddler in an 11 year old body.
 A toddler who has no ideas of the dangers in his world. 
A toddler who is tall enough to reach the stove, the counter tops and who thinks child locks were made to dismantle.
A toddler who is too big to grab under one arm and haul out of the way of danger.
A toddler who realizes that other people will give him ten times more freedom than mom and dad, and has no qualms about going behind our backs to attain that freedom.
A toddler who doesn't understand his limitations, but is fully aware that his peers have privileges way beyond what mom and dad allow. His inability to comprehend his world and the gap between what he wants to do and what he is allowed to do, means he blames the very people who are expending a tremendous amount of brain power to keep him safe. 

It often feels like a no win situation and what is even worse, is the realization that while he is growing physically, mentally and emotionally we are only making creeping progress thanks to FASD and a gene mutation. When you know there is no end in sight, when you know things are only going to become more difficult, it is sooo hard to keep your thoughts positive and embrace the life you are called to, Many mornings find me praying for grace, strength and love because I often still feel drained from the previous days escapades.

These FB groups have been invaluable in helping my husband and I understand the intricacies of FASD, as well as providing a place where we can ask question's and share in the humor that only the fellow parent of a child with FASD would find laughable. 

-Parenting FASD Kids

-Flying With Broken Wings

-FASD Caregiver Success

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Monday, November 26, 2018

When Sickness Halts The Process Of Healing From Trauma

This blog has been sadly neglected these past weeks. I have had a taste of what happens when one's body has had enough and things crash in a spectacular manner. My doctor told me I have spent too many years, "being mom," eventually the dam broke and I was in trouble. Basically too many years of health problems that were glossed over, too many years of antidepressants, to many years of stress and trauma compounded with Lyme and coinfections made my lymphatic system sluggish and I was no longer able to detox, and that is absolutely vital when you have Lyme. My doctor likened my situation to a clogged toilet. If you keep flushing the toilet, eventually you will have the mess throughout your house. That is what happened when my lymphatic system couldn't get rid of toxins, they spread throughout my whole body leaving me very sick. Thankfully, things are now headed in the right direction and I have hope that one day, in the not too distant future, I will feel well again.

The biggest casualty of the past weeks, is the healing that was beginning to take place in some of our children. Dean and I have worked hard these past ten years to prove to our children that we are trustworthy, that we have their best interest at heart, and will care for them no matter what. Trust is a huge mountain to climb for children who's earliest moments were founded on trauma. They never learned to trust, rather, they watch out for themselves no matter the cost. This makes building a bond with the child very difficult. We were making progress though, and then I got sick. I couldn't do more than meet the children's basic needs and all those old feelings of, "Mom isn't strong enough to take care of me," came roaring back. Dean stepped up to the plate and did an amazing job, but as every trauma parent knows, the buck starts and stops with the primary caregiver.

One child was certain I was going to die. No amount of reassurance helped. Her behavior was off the charts and every time we tried to help her work through her fears, she clammed up because she just knew we wouldn't understand. At first she assured me of her prayers every day but eventually she stopped, "Because you aren't getting better even though I am praying." I knew where her fears and anxiety were coming from, but was helpless to reach her. I hate that helpless feeling.

One of the first things to leave our children when a stressor comes and they revert back into trauma mode is their ability to play. We have seen this often through the years; during visits with birth parents, when Braden was at his worst, during our CPS investigation. During these difficult times, the children wandered through the house crying, whining and getting into trouble. It is heartbreaking to watch, and doesn't get any easier even when you have witnessed it multiple times. The first few weeks after I got sick, the girls sat around, fighting and being grumpy, nothing held their interest for more than a few moments. I was so glad to when things began to change and they could play again. 

Joseph, while exceptionally weepy, coped amazingly well. Many people with FASD thrive on routine and he is no exception. We stayed home all day, every day, with the occasional doctor appointment, and those days he stayed with Tristan. He did his school work, had quiet time and played each and every day, much to his delight. One day he wrote me a letter detailing how he will do all my work so I can rest and get better. Plus, he will chip rocks (he does this by hitting small rocks together until the crumble into small pieces) and sell them along the road, then give me the money to pay for my doctor bills. I am continually amazed at the kind heart hidden beneath all the behaviors brought about by FASD.

So while the past weeks have been among the hardest we have gone through, and that is saying alot, I think there is a light at the end of the tunnel. We have an incredible amount of repair work to do in the relationship department, but by God's grace we will regain the ground we lost these past weeks. Thanks to everyone who faithfully prayed for us, we covet your continued prayers.

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Monday, October 8, 2018

Finding Peace While Fighting Lyme

The past months have been one wild roller coaster ride. I thought I knew about Lyme after all we went through with Kiana during the last two years, but I came to find out that I had no clue, none. I didn't know how horrible the human body can feel, how rotten from the inside out. Kiana was unable to tell me how she felt beyond complaining that her head hurts or her stomach doesn't feel well. She would roll and toss on her bed, throw her body against the wall, and scream. I didn't know how to help her, and if I am honest, there were times when I felt she was being overly dramatic. I don't think that anymore, in fact, I now wonder how she kept going with how terrible she must have felt.

 Lyme has a way of putting blinders about your eye's and brain, so you can only see and focus on yourself not a good thing for a mom. I have been spending my days on the sofa, pounding Heavens Gate's pleading for answer's and  struggling to find joy and purpose in life. When I emailed a friend telling her my woes, she said, "You sound as if Pharoah's army is behind you and the Red Sea is before you! That was a pretty apt description of the terror and emotional overload that Lyme is known to inflict on those with the disease. Lyme, coupled with teaching and parenting traumatized children, was pushing me under and I felt like my prayers weren't being heard. Home schooling was/is my biggest struggle and everywhere I turned I was met with another solid wall.

Then last night Kiana came to me and said she needs to talk. This in and of itself is a huge improvement. Maybe the oft repeated message, "Use your words!" Is finally sinking in! Getting off the sofa and walking back to her room required a huge amount of energy on my part, but the poor girl has only had a shadow of a mom here of late, so I mustered up the energy to follow her. She has had some traumatic experiences in life and while some counselling would be helpful, with her it is never that easy. Anyway, she said, "Mom, sometimes I think God doesn't even care about me anymore. He keeps letting me get hurt and I am not like everyone else and it just isn't fair!" 

I had to smile to myself because I had just been having a similar discussion with God. I knew I was being irrational, but I couldn't seem to help myself, now I had my daughter looking to me for answers and I knew I couldn't just give her a glossed over reply because she really wanted help. This is what I told her, "Kiana, mom has been struggling with the same feelings. I feel like God doesn't hear me either, things just don't get better and I feel like giving up. I know exactly how you feel." We talked about sin and how God gives everyone a free will, which means people will make bad choice's, we will get hurt and bad things will happen. We will lose loved one's, our health, our friends, and there will be times when life doesn't seem worth living. I explained that Satan wants her to feel discouraged, he wants me to feel discouraged, and if we let ourselves think that God doesn't care Satan is getting the upper hand. She connected with that thought and we talked about ways we can help ourselves climb, and stay, out of the rut of discouragement even when our brain's and body's feel sick. 

When Kiana jumped over to the Lego house she had built and began showing me her newest creation I knew the crisis was over, but it wasn't only Kiana that was feeling better, I was too! Somehow having to verbalize all that, having to put my self pity aside and come up with biblical answers to her questions, made me realize just how far down the wrong trail I myself had gone. 

I saw a quote recently that said: 

"We are too prone to engrave our trials in marble, and write our blessings in sand."
                        C.H. Spurgeon

I was quite challenged by that quote because in reality, God has worked many miracle's in the past year, but instead of focusing on them I am so prone to focus on the day to day struggle of putting one foot in front of the other. So as I sit, I will count my blessings, rather than fret about the, "What if's."

Wednesday, September 19, 2018

A Bid For Freedom - When Mom And Dad Become Complacent

Joseph has a way of throwing us for a loop whenever we become too complacent about enforcing rules and boundaries. We have multiple supports in place to ensure his safety, and our sanity, and when we remember to implement those supports we don;t have as many melt downs. The trouble is, there are umpteen things to remember. Things like, sensory issue's, dysmaturity, trauma trigger's, and the list goes on. To complicate things even further, there are times when certain supports aren't needed and we forget about implementing them, until something happens and we suddenly realize we haven't been doing _______ for awhile.

One of Joseph's supports is his door alarm, a simple magnetic door alarm that Dean fastened to the top of his bed room door. We have a remote in the hallway that rings loud enough to catch our attention anywhere in the house. We installed the alarm when Joseph began wandering the house at night and eating whatever struck his fancy. As his brain doesn't tell him when he has had enough to eat, we quickly ran into problems. We put the alarm on his door and didn't say much about it. He assumed it was placed there to keep bad guys out of his room and no, we didn't plant that idea in his mind he came up with it on his own.

At first we faithfully made sure the alarm was plugged in and in working order, but eventually as he was no longer testing his alarm to be sure it was working, we got sloppy. Then we would find an empty food bag, a stash of wrappers behind his bed or stuffed into a hole in his wall, and we knew we had better keep an eye on that alarm again.

The other night, something woke me out of a sound sleep. I still don't know what it was, but I suspect it was Joseph's bedroom door squeaking as he cracked it open to check if the alarm was working. A few seconds later his alarm went and I assumed he was coming to tell me that he wasn't feeling well. He has been dealing with some health issue's and I told him he must come get me when he doesn't feel well. When he didn't come to our room, I decided I had better go check on things. I went to look what was going on and found him lying on his bed, hugging his stuffed puppy, Sport, and looking ever so guilty. After questioning him, he said, "I wasn't tired so I was going to look for free tractors." He has a fascination for tractors and recently found a tractor magazine he spends hours poring over. Since I was tired, I decided to accept his explanation and go to bed.

The next day Dean and I asked him a few more questions, and found out that this wasn't the first time he was out of his room in recent days. One of Joseph's chores is too sweep the hallway, making it easy for him to loosen the alarm, then all he had to do was unplug it on his way to bed at night. Turns out that the other night he sneaked out of his room, crept down the basement stairs and crawled out the window. He chose the window because he didn't want us to hear the outside door squeak, he then went to the shop and rode his bike for awhile before coming back to bed...and we were none the wiser. This folks, is why parenting a child with FASD is so challenging - you never know what they will do! At first we were a bit skeptical about his story, but he stuck to it and the details never changed, so we had to conclude he really had gone out and ridden his bike, while we slept totally unaware. Doesn't give one a very good feeling to know your 10 year old can get out of the house  at night without your knowing it! My mind made a few frantic loops, thinking of all the things that could have happened...he was in the shop, a place he is not allowed to be without supervision due to all the tools. He could have brought anything back into the house with him and done all kinds of damage, he could have wandered off into the woods, he could have hurt himself and we wouldn't have known he needs help...Thankfully he simply went for a bike ride and made it safely back to bed!

Monday, September 17, 2018

Willfulness Or Brain Damage?

Having a child with FASD makes maneuvering sibling relationships challenging. We are trying to teach our children that  Joseph's behaviors, which bug them to no end, are due to brain damage not a fixed desire to irritate his siblings. Sometimes I wish they would simply show him a little more grace, that would make being the mom would be so much easier! But then I remind myself of how often I fall short of responding with patience and understanding, after one too many challenging interactions with him.

After an exceptionally challenging day, Dean said, "I think Joseph tries to be kind and respectful, but he falls so far short of it that it is difficult keep in mind that this is brain damage, not will full behavior."

I KNOW it is brain damage and I KNOW he can't help it, but when a child's behavior drains a family of their emotional energy, it is hard to remember that. Sometimes I totally forget and when I begin seeing his behavior as will fill, bad things happen.

First, whether I like it or not, Joseph regulates off of me. He relies on me to maintain his equilibrium and when I am irritated (even silently irritated), with him he falls apart and tries to regain my favor by doing things for me.  Anyone who has a child with FASD will know that these children often struggle to anticipate their own needs, much less someone else's. Having to exert brain power to meet another's needs, means they have that much less to use on themselves which means more accidents, more messes, more tears... all in the name of trying to regain my favor. So who is at fault here?

Joseph adds his three cents worth to every conversation, unless we specifically tell him, "No more talking!" Then he sits and sulks because, "You never let me talk!!!" Which of course isn't true. After he has butted in and made multiple comments which may or may not have had anything to do with the subject being discussed, it is easy to become frustrated. To complicate matters, the more stressed he is, the more he talks. So if he senses that we are getting upset with his ceaseless chatter, guess what he does? You guessed it, he talks even more. I need to remember this is impulsiveness and/or dysregulation, not will full behavior, but it is so hard to remember when it happens so often. 

He will do whatever anyone tells him too (unless it is in regards to chores). If I send him on an errand, and Lia stops him and tells him to do something else, he will drop what he is doing and do her bidding. I will find him wandering around in another part of the house and ask him what he is doing, his reply, "_________ asked me to help fix this toy so I went to the basement to get the things I need." Never mind the rule that I need to see him at all times, never mind that I told him to come right back....everything goes out the window when someone asks him to do something. Yes, we are working on his siblings in this area as well, because they know they are not to be telling/asking him to do things without permission. Confronting him does no good. Yes he knows what he is supposed to do. Yes, he knows that he is not to run off and do things without permission, but in his mind he isn't in the wrong because ________ told him too and he was only trying to help. I need to remember that he has a kind heart and isn't trying to be disobedient. 

All this sounds so simple. Remember this is brain damage, and the child cannot help it...until you take into consideration the fact that he does have the ability to misbehave intentionally. And when that happens, if you do not give a consequence, his negative behaviors will increase tenfold. For some reason, he seems to think that if mom and dad slack off and give him an inch of leeway, they won't mind if he takes a mile of freedom. For this reason we have to consistently enforce our rules and boundaries, while taking in to consideration that he has brain damage and what appears will full, may be anything but and he will be crushed if we give consequences. If it is will full and we let it go, however, our problems are only beginning. 

For example, he has trouble regulating the quantity and appropriateness of his words when we are in the presence of others. For this reason, we have implemented a rule when in the presence of strangers, "Answer their questions, but then no more words." He is able to do amazingly well most times, with frequent reminders. The other day we had a visitor and I reminded him of the rules before she came in the door. He nodded (when he knows exactly what is expected of him, he can often relax and do well in situations that would typically increase his anxiety). He answered her questions appropriately, I smiled at him to reassure him he was doing well and then he sat and quietly listened to the conversation. Suddenly he piped up, "I drove over a kitten with the trike once and Tristan had to dig a hole and bury it!" I will leave you imagine the rest. 

Knowing Joseph's impulsivity, I was going to let the incident pass without further comment because we all make mistakes and it appeared that was all it had been. Except his behavior proved otherwise. After our visitor left, Dean talked with Joseph, explaining why we have rules and the necessity of obeying them. That chat cleared up the air and he went to bed happily. It is so hard to know when to hold him accountable and when to chalk it up to brain damage. 

*By the way, the cat story was due to confabulation... we did have kittens once upon a time, and I accidentally backed over one with the explorer, which was the end of poor kitty. He remembered bits n piece's and filled in the gaps with, what to him, was a plausible explanation.

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